#spoonie medias

So friggin important to remember. The word ‘burden’ haunts me. I try not to think about it. #spoonie#invisibleillness#cfsme#depression . #Repost @autoimmunepaleo with @get_repost
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“I am not a burden.” Michelle from @hapahealth with these words that I needed to hear.
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I got “glutened” this weekend when we had guests. That night I couldn’t sleep and I had a panic attack at 2 in the morning. My boyfriend woke up and I cried to him that I felt like a burden. In my panicked state, my worst fears about my illness surfaced: that I am an inconvenience to my loved ones, that I will never be healed, that I will never feel like myself again. .
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Of course I know how untrue those fears are, but they still exist and that’s okay. Instead of allowing them to rule my life, I choose to acknowledge them and move on. .
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I share this story because I needed these reminders: -My illness does not define me. -I never have to apologize for my needs. -No matter the setbacks, I continue to heal. -My health comes above anyone else’s “wants.”
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My illness is a part of my life. At times it’s really hard and I wish I could be “normal”, but everyone’s got something. This is my thing and I’m going to make the best of it. .
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What is one positive reminder you can tell yourself on those tough days? Let us know in the comments so we can inspire each other ❤️
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[@hapahealth] #aiptakeover

Celebrating body diversity is important yet so hard to do. We live in a world where thinness is appreciated and fat bodies or thick bodies are looked down upon. Only accepting people at the size they are at now is unacceptable. Sometimes we say things such as the phrase “you are beautiful just the way you are”. The phrase is often meant with intentions that you are considered beautiful how you are right now and the size/ weight you are right now. The phrase would not be replicated if there was a weight gain/ loss to factor in. Weight fluctuates and many factors influence these, so many are shamed because of a weight gain. We celebrate weight loss but don’t ask how they were able to achieve that; and leave out the unhealthy behaviors that resulted in the celebrated loss. Body diversity is celebrating more than thin, thick, phat, and fat bodies. It is celebrating bodies as one goes through their life no matter the size that they are. Men are left out of these conversations as well and plus size men are experiencing a lot of shame/ blame similar to plus size women. Men, women, agender, trans, and any facet of life experience weight, and it is different for each and every human. Instead of greeting differences with hate and shame let’s give them love and celebration. You, just as you are, are enough. You do you babes -Kari ❤️❤️❤️ #spoonie#chiarimalformation#chiaristrong#desexualizethefemalebody#invisibleillness

The clean air, walking along the waters edge…it calms my heart. Chronic illness brings anxiety, depression, PTSD…sometimes its pathologically caused...BUT, sometimes it is a bi-product of what my acupuncturist calls “medical cursing”. This is what birthed my anxiety and PTSD…the words that are spoken flippantly, without care or compassion, the guesses on what the future “might” hold, those seeds of “what ifs” that get
At age 16- Spending time at the ocean has been good for my sole lately. Taking in the clean air, walking along the waters edge…it calms my heart in a way I never knew.
Living with chronic illness, many times, bring along with it anxiety, depression, PTSD…sometimes it pathologically caused, like from food intolerances, gut imbalances, mental health issues. BUT, sometimes it is a bi-product of what my acupuncturist calls “medical cursing”.
This is what birthed my more crippling anxiety and PTSD…the words that are spoken flippantly, without care or compassion, the guesses on what the future “might” hold, the seeds of “what ifs” that get planted.
Age 16- You’re going to die.
Age 19 - You will be confined to a wheelchair by age 20 and be on kidney dialysis.
Age 26 - If you don’t take this liver medication, I will march you up to the cirrhosis clinic and you can meet those people who wish they could take medication like you rather than be on a transplant list.
Age 30 - You have no platelets. You are a high risk of spontaneous brain bleeds.
Age 34- You have the worse case of Perioral Dermatitis we’ve never seen, you will have to learn to live with it.
Age 39 - you have a fatal lung disease and have 3-6 months to live.
Today, I have learned to be much more picky about the doctors that join my team. What it’s taught me? To protect my mind and to value compassion and empathy. It’s as needed as the medication. It’s innate for some. For others it needs to be learned. Teach it. Model it. We never fully know others journeys that have shaped where they are today. And for the record, not one of these curses has ever come to fruition. Not one. #spoonie#lupusawareness#anxiety#ptsd#invisibleillness#wordshurt#godisgood#mentalhealth#alternativemedicine

Life can be difficult. You push me, support me, fight alongside me...which makes this life so full of love. We don’t have a typical marriage. We were way too familiar with “in sickness and in health” long before we said our vows. But WE have become a force in the lupus community. WE are advocates for lupus, POTS & fibromyalgia so that future couples will have cures. WE make the most of every single day. WE own our story...and it’s my favorite story.
You always lift me up (literally & figuratively) and find ways to laugh when the logical response would be tears. The impossible is possible because of you, and I know that we will get through anything that comes our way. I am my best self by your side. I don’t just fight for me. I fight for you, us, our family and our future...and I will never stop. 💜💪
#ThisIsWhyIFight
@uncle_dan_knee @fight2breathe #fight2breathe

Give me all the purple cabbage 😍
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Keep pushing my limit with sugar and carbs and body keeps pushing back!! Trying to focus on all the veggies and healthy fats to balance my hormones & heal my gut.
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As much as I love carbs & sugar, I typically have trouble sleeping, digestive issues, mood fluctuations and headaches when I eat it. Yikes!
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How does your body respond when you eat sugar? Do you have the same response as me? 👇🏻

“EAT GOOD, FEEL GOOD!”. I struggle with getting enough energy to cook, but I have to remember taking the easy way out with food only hurts me. It's unfortunate how hard it is here in the USA to find healthy food. I've visited different countries where a lot of the genetically modified ingredients are banned. I felt so healthy when I was traveling.
I used to think it's okay, no big deal. Well, I was wrong. It's not normal to have gurgling stomachs and the feeling of never being full and all the horrible bathroom shenanigans that go with it.
I started to eat healthier, and it did help alleviate (not cure) some of my symptoms. I caved this past week and went back to the accessible route of food and boy did I pay for it. I would stress even if you don't have health issues to pay attention to what doesn't make you feel good.
Hope everyone is having a great Tuesday!
#spoonie#spoonies#thinbluespoonie#chronicillness#chronicpain#invisibleillness#autoimmunedisease#healthyfood#healthylifestyle#healthyeating#eatgoodfeelgood#instagramers#blog#blogger#instapic

Take me back to the Sunday sun, brunch, and energy, puppy sitting this absolute cutie 😭😭 it was a gorgeous day but wiped me out, my PEM flared up for about 3 days 😪 feeling better after a huge sleep and back to work & uni after my few days off for my wisdom teeth!

RP from my beautiful teammate Katy McClain👑
A couple months ago... after all us SeneGence gals were obsessing over “Girl Wash Your Face” by Rachel Hollis someone asked in the Crown Princess group if SeneGence could PLEASE get her to come speak at Leaders.
Everyone thought that would be a COMPLETE DREAM COME TRUE
And... LIKE ALWAYS...
Just like every single time we’ve asked, they delivered.
Our keynote speaker for US/CAN Leaders Conference was just announced as Rachel Hollis, author of New York Times best-seller, "Girl, Wash Your Face" and owner of the Chic Site, a popular lifestyle blog for working moms. Rachel is deeply passionate about empowering women and we are thrilled to have her join our event!
Hey SeneGence, we want a rose gold shadow. ✅
Hey SeneGence, we want start up kit options.
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Hey SeneGence, we want BRIGHT shadows now. ✅
Hey SeneGence, we need crazy colorful lip colors. ✅
Hey SeneGence, we want the perfect nude lip color. ✅
Hey SeneGence, we need to reformulate our mascara (in progress, so basically ✅)
Hey SeneGence, we want hair care (in progress so basically ✅)
Hey SeneGence, we want an app where our customers can try on colors, (in progress so basically ✅)
Hey SeneGence, we want fooops in wipe form. ✅
Hey SeneGence, we want RACHEL HOLLIS!
✅✅✅✅✅✅ @msrachelhollis •
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#LVSLips#bossbabelife#senegencedistributor#nycgirl#teacherhustle#thinksocial#buildingmyempire#investinyourself#flawlessskin#fountainofyouth#nycmakeup#beyourboss#babessupportingbabes#workfromhome#makeupofig#makeupideas#skincarejunkie#teacherbyday#teachersofig#dogmomlife#hashimotos#spoonie#skinisin#girlwashyourface#rachelhollis

“Neurostimulation is the purposeful modulation of the nervous system's activity.” They are typically used as a last resort for management of severe and debilitating neuropathic pain. It works in a similar manner to a tens unit, or estim procedure: by blocking out pain signals and replacing them with a painless sensation, using electric currents. There is quite the array of neurostims on the market: for head pain, for limb pain, for spinal cord pain, for gi pain... and there are different levels of how implanted they are (are only the leads inside, or is the generator too) and if they’re placed behind the ear, placed on the spinal cord anywhere from the neck to the low back, or placed inside the stomach/intestines.
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I happen to have a percutaneous nerve field stimulator (PNFS), which works by stimulating peripheral and cranial nerves, and providing pain relief over a duration of time. The leads go into my head at four incision points, while the generator is not implanted under the skin. It was placed as part of my pain management for lipomyelomeningocele, after my spinal cord tethered again following neurosurgery + my fatty mass grew casing scoliosis, hyperlordosis, disk bulges+unfusing etc. I wanted to create a piece portraying a neurostimulator, as I think it is vital for inclusive artwork to exist so people are able to see themselves beyond the sphere of their own bubble.
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My Artwork depicting devices such as this one, along with representation of the physicality and emotional aspects of various illnesses is nominated for six wego awards. Voting closes on the 17th! link in bio! Wego highlight on my page has more info!
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@robodais + @the_pepper_mint happen to have SCS, and know more about that device than I do.
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#neurostimulator#gastricstimulator#spoonie#spinalcordstimulator#percutaneousnervefieldstimulator#tensunit#CRPS#spinabifida#lipomyelomeningocele#gastroparesis#chronicpain#neuropathicpain#spinalcordinjury#scoliosis#chronicillness#disabilityadvocate#disabledartist#wegohealthawards#disabledandcute#blue#illustrator#pain#art#creative#beautiful#drawingpeople#instaart#chalkpastel#illustrator#illustratorsoninstagram

#Repost @kayleighthepainslayer
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Lying in bed doing my best to maintain a positive mindset. Feeling defeated because I’m losing another day to pain.
The centre of my pelvis keeps slipping and cracking. It’s sending pain shooting down through my legs and across my lower back. Every time I move it’s slipping and hurting. My thumbs are hurting too; every time I pick something up my left one hyperextends and loses strength, and my right one just seems to be sore for no apparent reason.. It’s not as hypermobile as my left one, but the lowest joint is still sore.
I had wanted to do some work on my music today, but it’s going to have to wait. If I push too much I’ll most definitely crash and burn making things a whole lot worse.
I have a meeting with one of my bosses at 2pm so until then, I’m gonna lie in bed and hope that whatever alignment issues are wreaking havoc in my pelvis will right themselves. I can’t take advantage of my free time productivity-wise in this state, so I may as well use it as wisely as possible and give my body rest.
I need to remember that I’m just going through a bad spell pain-wise. The past few days have been rough, so it’s no wonder I’m feeling down. I’m allowed to be upset and the fact that I’m feeling this way doesn’t mean I’m failing. I’m terrified that another depressive episode will take a hold of me, but forcing myself to ignore feelings that aren’t 100% positive isn’t going to get me anywhere. If anything, it’ll probably make me worse. My anxiety about becoming depressed will make me depressed.
I’m in a lot of pain and there’s nothing I can do about that. I’m not failing. I can’t try harder to not be in pain, I just need to do whatever I can to ease my symptoms and wait it out.
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#honestpost#pelvicpain#jointpain#sciatica#shootingpain#hypermobility#migraine#anxiety#depression#ibs#chronicpain#chronicillness#flare#chronicillnesscommunity#invisibleillness#mentalillness#positivity#lackthereof#spoonie#spoonieproblems#spoonielife#sickgirl#sickgirlsclub#notafailure#doingmybest#selfcare#emotional#painslayer

📍 I’ve been searching for the words for the past two days and I just don’t have to words. I got my blood results back and I still don’t have an answer... trying to come to terms with the fact a may never have a positive diagnosis’s and will just live with a “mystery illness” from here on out. 😔
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So I’m going to take some time and go away for a few days for some R&R and spend some quality time with my grandparents and then Jacob will join me this weekend. 💆🏻‍♀️
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I’m annoyed, frustrated, pissed off and so many other emotions. I know life isn’t fair, I wouldn’t trade my life for anything and I know it could always be worse, but enough is enough somethings gotta give. ✌🏻
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#grandparents#noanswers#autoimmune#autoinflammatory#mysteryillness#butyoudontlooksick#invisibleillness#rheumatoidarthritis#spoonie#spoonielife

This is a page in my @getmessyartjournal for the season of seasons. Today is so smokey from all the forest fires, the air is still, hot and an eerie orange. I rarely use these hot colours by themselves in my art, there is no teal paint .. No green paint only the colors peeking through the yellows from the book page..... It feels right for today.

This is me looking into your soul...bc I kind of do that whether I like it or not...it just happens and always has. When I was little I would get in trouble bc I KNEW things without being told. It’s intimidating for many. Too much for many. But, it’s who I am. My dad called me a “mirror spirit” bc people have always seen in me what they are dealing with themselves....positive or negative. Anyway, here is to my fellow intuitive empathy mirror spirit wonders who find people at the gas station saying, “I don’t know why I’m telling you this. I never tell anyone things like this.” Use your gift with strength and compassion. And ALWAYS trust your gut. I love you! #intuition#soul#mirrorspirit#love#compassion#empath#spoonie

I've created two special paintings on 8x8 canvases that are for something exciting coming up in the next couple of weeks. The first one is an idea from a bigger piece I have down previously whereby my colour mixtures have gone round in a discreet spiral and rather than a solid black outline, it has a gold glittery outline which once dry will become a little more subtle. The second one is just a random mixture of colour mixing, I started it a couple of days ago, but tonight I finished the last edge and created some really exciting bursts of colour that I had to work to get them from the palette, on to the brush and then on to the canvas. I've got another 2 canvases to work on and I've got a couple more weeks to get them finished. As always doing these helps to relax me and I always enjoy working on variations or trying new arty things out. #artistherapy#art#artistic#artistsoninstagram#artist#artstudent#acrylicpainting#acrylics#myart#arty#chronicpain#chronicillness#arthritis#artismytherapy#guidance#hintsandtips#spoonie#spoonieslife#spoonieartist

“Today we’re gunna have a quick chat about ambulatory wheelchair users. Did you know that nearly 90% of wheelchair users have at least some function in their legs?! I get a lot of comments of people asking if I'm "better" "cured" or "faking" because they see some pictures of me in a wheelchair and some pictures of me standing. I am an ambulatory wheelchair user which means I can stand up from my chair and walk around a bit. This doesnt mean I'm faking. It doesnt mean im cured, and it certainly doesnt mean im better. My wheelchair is a tool that I use to help my body on a regular basis. It keeps me from being in too much pain and helps my energy levels when I know I'll be out and about for long periods of time. However, I also walk and that doesnt negate the fact that I need my wheelchair most of the time. EDS is a punk to my body yall. It's not a miracle when I stand to reach something on a high shelf (I've had someone yell that at me I kid you not) and I'm not faking when I pick up my chair from my trunk and sit in it (another thing I've been publicly accused of). #AmbulatoryWheelchairUsersExist
I'm tired of asking whoever is in the car with me to get my wheelchair and bring it to the door because I'm afraid of being harassed. I'm tired of assumptions and ignorance. So, this is my PSA: I'm Abby, I use a wheelchair but I can also walk sometimes. it's as simple as that. I shouldn't be scared to be myself in public. Take some time to educate yourself and think about how you perceive those in wheelchairs. Let's change the stigma around ambulatory wheelchair users ♿🤟”- @abby_sams [Image description: Abby sitting in her wheelchair smiling at the camera. Picture 2: Abby standing smiling at the camera.]

Stillness. This summer has been wonderful and crazy and packed with joy, but I find myself craving stillness. I’m a card carrying introvert guys, and need quiet and time alone to recharge.
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I want to get back to meditating (only 20 minutes / day - I’m not Matthieu Ricard or anything). When I have people who have recently been diagnosed with PSC ask me for advice, it usually goes like this:
1) get the best PSC specialist you can find
2) start meditating
3) develop some kind of creative outlet that has NOTHING to do with your illness
4) cultivate an extremely twisted sense of humour
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Meditation truly belongs on the second slot on that list. Sometimes my daily (or actually 3-4 times a week because...LIFE) meditation practice would be full of anxiety or feel like a burden, but it undoubtedly, without me noticing, changed my brain for the better.
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When I was going through truly wretched times like the time BC Transplant pulled my transplant funding, or when my second donor dropped out (I totally supported her in this but it was rough), or when I developed severe rejection after the transplant, somehow all that meditating managed to teach me that even though things were terrible, if I just held on, they would eventually change.
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It might get better; it might get worse, but the current state of mental torment wouldn’t last forever. I clutched on to that Buddhist wisdom like a piece of driftwood in my own personal storm.
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Meditation somehow allowed me to carve out a wee shanty of stillness I could retreat to while I waited for the inevitable change.
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Have you tried meditating? Do you meditate regularly? Do you also feel it is something that just calls to you as Autumn moves in?

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Over the past 2 years, as I've navigated my journey towards healthier curls, while also enduring medically-related hair loss, I've certainly learned a lot. One of the biggest lessons I've learned is the remarkable benefits of a consistent, overall routine. My curls are so delicate, and my health situation is so unique, that I had to learn early on which common curly habits work well for me and which don't. I quickly learned that being a "product junkie" wouldn't be a good idea for me, and that once I found what worked, it would be best not to deviate much from it.
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In that regard, only two product lines have stood the test of time and provided me with such undeniable results; results I could've never predicted. And that's why they are the ones I use with loyalty. I'm honored to be able to speak out about one of them, @righteousrootsoils, as a special guest and panel member at @naturallybeautifulevents ' Curls Night Out, San Francisco, this Sunday, August 19th.
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From soothing my scalp from the effects of my meds, deep treatments, helping create a healthy environment for an amount of growth I haven't seen in years, to stopping the extreme loss/shedding of my hair, to providing thickness, smoothness, shine and overall nourishment... RRO Hair Rx has truly been a blessing and will remain a staple in my haircare routine.
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If you're local, I hope you'll come out on Sunday so we can chat more about RRO! If you aren't local, haven't yet tried it, and have been eager to learn more about the benefits of its ingredients, I invite you to ↔️ swipe through this post. A HUGE thank you to my fellow curlie, the awesome Angel @jibaroboricua, fellow CurlsNightOut panelist, for sharing these incredibly informational slides with me, based on a post from his own page/his sources. (Go follow his page; it's fantastic!!)
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The photo on the right is from October, 2017. The photo on the left is from about 10 days ago, August, 2018. My ultra-fine, low-density, thin, low-porosity curls are at their peak of health, and I couldn't be more grateful. ♡
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When you find what works...go with it! Results captured on film say it all!
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/ J / #CurlyCurvyPassion
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#NOTSPONS

Sneaky pic because a guy from my church showed up at the dinner with us and he was sitting right next to me 😂 Salad is usually the opposite of what someone with GP should eat, but if you have a SIZZLING salad (aka they heat it up so the lettuce wilts a little bit and it’s more broken down) and suddenly it’s easier to digest. Honestly it’s making my stomach HURT LIKE HELL but it was good once I picked out everything but the wilted salad 🥗😂 And the soup was amazing because the veggies were so so soft and I’m thankful because I was actually kinda hungry?? I think this diet is working?? Like OMG. I wasn’t like HUNGRY hungry, but I was somewhat ready for food as opposed to being so full I couldn’t stomach it. I didn’t finish it, but I tried my best and I didn’t (couldn’t) count calories and that’s what counts. And I had a good time at dinner. And yeah maybe I don’t feel so well now, but I needed some time out of the house and some time just to talk and laugh. So, in the end, like they always say and I never usually believe, the pain is worth it.
So I canceled all my appointments. The financial counselor said to just wait it out until the clinic could pay for everything instead of getting into a fight with the insurance for bladder scans and more X-rays I might not even need. So now the end of my week is cleared. Mom’s coming home on Friday/Saturday even if the house doesn’t close then, so I’ll see her soon instead of calling her for multiple hours out of the day. I’m watching the new season of OITNB because my gay ass loves that show, and it isn’t disappointing me 🧡🖤 Life feels okay, I guess? I’m thankful I don’t feel like dying and I actually have energy. I guess better days do come every now and again.

Sometimes you just gotta take your shoes off and ground. 🌏 //
It’s been hectic getting back into my normal life. I’ve taken 4 detox baths in the 4 days I’ve been home and slept 10hrs a night. I finally took my vitamin B shot and felt a lot better. (Magic ✨)
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I met with a fellow #spoonie today to answer some questions. I watched her cry as she said things like, “maybe they are right and I’m just stressed.” Nah. Nah. Nah. Don’t do that to yourself, girl. The world and doctors will happily gaslight you and make you feel crazy ... don’t add to that toxicity. //
You know your body, believe it. Fight for yourself, fight your health, fight to live the healthiest life you can. And that often means firing those doctors who don’t listen. //
You deserve it. We deserve it. (Of course self-care and stress management is a piece of the puzzle... but for most of us, it is FAR from the only piece.)
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Love you all. Keep fighting. 💪🏼💚💪🏼💚💪🏼💚💪🏼
#lymedontkillourvibe#morethanlyme#chronicillness#invisibleillness#cfsme#cfsstrong#chronicfatigue#fibromyalgia#keepfighting#wegotyou#everyonedeserveshealth

Feeling worthless is very common when you have a chronic illness. Not being able to be your old self can give you the feeling of not being able to keep up and therefore you feel worthless.
Along with fighting our bodies (and sometimes doctors) we have to fight with our emotions.
As of we weren't tired already LoL 🥄🦓🥄🦓🥄🦓🥄 Artist: @thelatestkate

#partner NEW RECIPE here on Instagram for you guys!! I never post recipes just on Instagram, but these Loaded Japanese Sweet Potato Fries with @NaturalGrocers are worth it ;)
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These fries are spicy, and delicious while still being paleo & AIP! Plus, they're made with ingredients that can all be easily found at Natural Grocers! Natural Grocers is one my absolute favorite stores. They carry amazingly high quality products, and are perfect for making recipes like this one...
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INGREDIENTS
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For the fries & toppings
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2 Japanese sweet potatoes, sliced into fries
2 tbsp coconut oil (or avocado oil)
1 tsp sea salt
1/4 red onion, diced
3 tbsp green onion, sliced
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For the wasabi mayo
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1 small avocado
1/4 cup native forest coconut cream (chill a can of coconut milk over night and use the cream on top)
1 tbsp avocado oil
Juice of one lime
1-2 tsp wasabi powder (adjust to taste)
1 tsp ginger powder
1 tsp onion powder
1/2 tsp sea salt
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INSTRUCTIONS
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Preheat the oven to 400 F and line a baking sheet with parchment paper.
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Evenly space the fries on the baking sheet and top with oil and salt. Bake for 30-35 minutes or until crispy. Set aside.
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Make the wasabi mayo by combining the ingredients in a blender, adjusting seasonings to taste. Reserve any unused mayo in the fridge for about one day.
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Top the fries with the green and red onion, and the wasabi mayo. Serve fresh and enjoy!!
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Thank you @naturalgrocers for partnering on this recipe and for being such an amazing resource!